In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

It's a good story that talks about CaringBridge, the home of my year-long journal, and CarePages, another site. There's a lot of e-patient in the story - people getting and giving support, using the Internet to better endure whatever they're enduring.

I am personally very grateful for the free service CaringBridge provided during that year. But I must say, I am frustrated to this day by the poor quality of their software. Just this week I've had two different people mention that their CaringBridge accounts have again gone flaky. One is again no longer receiving email notifications of my posts, and the other is again unable to log in at all. Those two bugs have been reported to me at least 100 times in the past year by people who were trying to support me.

I spoke at least twice last year with CaringBridge staff and they said they're not fixing those bugs, but are instead investing in creating a Spanish language version (which will of course include the same bugs).

The other major bug I encountered repeatedly is that your session can time out while you're in the middle of composing a long thoughtful message - which is definitely a key purpose of a cancer journal. When a bank site says your time is almost up, you can click to continue - but CaringBridge doesn't even do that. Instead, it waits until you hit Submit, and THEN tells you you were already timed out - and then you find everything you typed has been discarded and you can't get it back, via the Back button or anything.

I very much hope that this post will prod founder Sona Mehring into fixing this otherwise wonderful web site.

Have you had experience with either CaringBridge or CarePages? Have you had problems like these?

8 comments:

Thanks for the mention of CaringBridge and the coverage on MSNBC. We are glad that you, like millions of others in 2007, found CaringBridge to be an important part of your healing journey. We are troubled that you and some of your visitors experienced problems during the year and that you were left with the impression that we were not aware of or concerned by these problems.

We are pleased to deliver our service to a growing number of individuals and families across the globe (nearly 2.5 million last month) and we know that the vast majority of these individuals have a great experience participating in a CaringBridge community. We also know that each of those visitors has unique browser settings, security features, personal preferences, SPAM filters and other such settings that we are working very hard to keep up with. In working with people who reported problems, we learned that when many people upgraded or changed browsers or operating systems last year, they found themselves with new security settings that require modification to work with an interactive and private service such as CaringBridge.

Please also note that in addition to a Spanish translation of CaringBridge, our next major upgrade will address our messaging methods to rely less on pop-ups (which is how we currently allow authors to extend their session up to 3 times). We look forward to this release in early second quarter, 2008.

Again, thank you Dave for the attention you gave to CaringBridge. Please know that we are indeed constantly working to remain compatible with our millions of visitors’ individual and unique system and software settings.

Well hi!! It's great to meet you! I would be thrilled to support you in getting this stuff cleaned up, so I can recommend your service to everyone without reservation!

I myself have never, ever seen a pop-up to extend my session, and numerous of my users have reported the same. Is this something that only works in Internet Explorer? I didn't notice anything on the site saying that only IE is allowed, and the site apparently doesn't check for browser compatibility, as many other sites do, because I never got a warning saying "This site won't work with Firefox."

As I say, I'd be very happy to help sort these things out. I did not get such a warm reception on my 2 or more phone calls and emails last year. If you want, write to me at debronkart (at) comcast.net with a phone number or email where we can continue the discussion. I'm glad to help. Just need somebody who wants to listen. :)

Gosh, I just tried to sign up for CaringBridge tonight and had the exact same problems you mentioned in Feb. (And there is nothing wrong with my computer. It's quite up-to-date...no need to upgrade anything, thanks). So, looks like they haven't fixed the issues yet. I tried to send a message to the folks as CaringBridge, but the automated response I got said I won't receive a reply for 2 days. Unfortunately, my son is going in for spinal surgery in 24 hours, so that won't do me much good. At this point it will be less trouble for me to just go to Blogger and start my own blog for my son. *sigh*

I don't know what might have happened in your case. I do know that CarePages is an alternative that a lot of people like. My own hospital now offers CarePages from its web site.

CaringBridge did contact me with one fix that they'd developed - actually a workaround: if they time you out, they now pop up a window saying you might lose your data and you might want to copy it into Word. I helped test it and made some suggestions. Haven't heard back since.

I heard again this week from a friend whose login stopped working again.

I don't want to sound ungrateful - I most CERTAINLY am. But I do believe a family in stress should have information on what works and what doesn't. That's a big part of what's at the heart of being an empowered patient.

Dawn, if you know how to set up a blog, and your community (family & friends) are blog-savvy, that can work fine too. My cousin had a serious spinal cord injury in January and set up a blog of his own.

This is not spam. Here are some of the points that make PostHope a better more modern option:

- No: advertising- No: solicitation for donations or tributes- Allows: Public and private sites with advanced privacy options like password protected sites- Allows: Fundraising - provides a secure, easy to use platform for users to receive donations and PostHope does not collect any fee or portion of the donation.- Allows: Customize look and feel with photos and themes- Enables: Easy to use social sharing- Enables: Automatic notifications of new content (Updates, posts, photos etc)